It was my time to FLY

Not sure who Khanos is....but love this saying,  "There's a future version of me who's proud I was strong enough." 

It's six months postop TODAY.  Six months from the day I was literally terrified for the first time ever.  Six months from the day that when the anesthesiologist put me to sleep I honestly wasn't sure I would ever wake up again due to my frail body and organ systems.  I was no stranger to this surgical rodeo. I'd had six previous GI surgeries for various reasons, each having a little more or less efficacy. So there wasn't a whole lot of prior experience to give me strength and courage.  No!  Six months ago -- that was nothing short of a giant leap of FAITH.

Now I am here.  Six months postop almost to the minute at which Dr Kareem came and talked to my husband and brother to say that despite my malrotation being one of the worst he'd ever seen, he and his brilliant co-surgeon, Dr. Costa,  fixed it. They did exactly what they'd promised: to rearrange and secure everything (and I mean everything from the intestines to the stomach, muscles, liver, uterus, gallbladder and appendix) into the places God intended them to be.  Now.... in my case I'd already had the gallbladder and appendix out; we left my uterus alone; and lucky for me despite some very peculiar incidental findings related to my major arteries we left my circulatory and cardiac systems alone since they were functioning incredibly well. But any GI anatomy remaining was moved and sutured into its anatomically correct location. 

These last six months have been challening.  And, yes, I do still have some postop peculiarities that we are working out.  But holy cow! To think where this all began, and where it was going if I didn't leap.... 

We just returned home from our first family road trip to HershyPark in Pennsylvania.  Interestingly enough we passed signs for Pittsburgh.  Drs. Kareem and Costa were at the UPitt Medical Center prior to Cleveland Clinic.  It gave me pause and I spent some time on that seven hour drive reflecting about my last few years and all the  moving parts it took to get me HERE.  I was reminded not just of their brilliant work, but of the fact that I was only surgical case number 42-ish.  This malrotation solution is so new.  There is no empirical data endorsing or refuting its possible success or failure.  There was no guarantee that it would actually work.  I did have access to a Facebook community of Dr. Kareem's patients with my same diagnosis - the elusive "intestinal malrotation" meme.  That was all.  Some with no improvement postop.  Some with huge improvement postop.  Some with postop horror stories. Some without the opportunity to even have the surgery.  Saying it was scary does not even begin to accurately describe it.

But I did leap.  I leaped despite being told my intestinal malrotation was not amendable to surgical intervention.  I leaped despite multiple professionals telling me there was nothing that could be done and that (and I quote) it's a bummer that some people with malrotation just have this happen (referencing my repeated intestinal strictures that rendered me unable to take in solid food and caused intermittent transient bowel obstructions at whim any one of which could have killed me if it was "the big one.")  We never knew when an episode would come on.  I managed to identify some inconsistent triggers, as well as a few consistent ones, and did my best to mediate the presence or impact of said triggers; but it was really all futile.  My anatomy would operate in its own fashion and on its on agenda.  I would continue my full liquid diet of meal replacement shakes and medically prescribed supplements and continue to lose weight until I needed in-patient total parental nutrition (TPN) via IV which had its own set of risks and side effects.  No!  My amazing RN husband and I weighed our options, looked at our two young (6 and 8 at the time) beautiful children and decided to leap.

I did the research I could.  Some patients were kind enough to send me their operative reports which I forwarded to my local GI team (gastroenterologist, general surgeon) as well as a highly revered prior general surgeon of mine with whom I've maintained communication and from whom I regularly seek guidance.  The consensus was unanimous in that all these professionals believed it was my best option.  None would say whether or not they thought it would work, but all agreed my condition and manner of managing that condition was not sustainable.  Aye aye aye!  Fear - understatement of the century!  

Drs. Kareem and Costa are the only surgeons in the country performing this technique.  They developed this malrotation solution over more than twenty years of study and work as Intestinal Transplant Surgeons.  They worked in Pittsburgh together for more than twenty years and now are at Cleveland Clinic in Ohio leading the Department of Intestinal Transplant and Gut Rehabilitation.  They are quite the team!  Dr. Kareem is kind, knowledgeable, encouraging and confident in his work and skills.  Through a series of very fortunate events my case was sent to him for review.  He called me directly from his cell phone to discuss his thoughts on my situation.  He didn't rush me.  He answered my questions.  Then said I could call or text him at any point if I needed more information before making the decision to travel to see him or have surgery.  Who does that?  An angel that's who.  This man truly cares about his work.  He believes in his work.  And his patients are not just numbers or case statistics on paper.  

And then there's Dr. Costa ... Oh!  That man is my knight in shining armor. So as fate would have it, though both Drs. Kareem and Costa were present for my surgery, Dr. Costa was there from my pre-operative assessment on Monday to my surgical check-in Thursday morning at 5:00AM right through my discharge ten days later and my three-month postop follow-up.  I saw him every single day while in the hospital and when I came home he reached out through my nursing coordinator, Chris, who is also seriously amazing! 

When I walked in for my first office appointment I was scared; I was frail; I weighed barely 90lbs and had a BMI of barely 14.  Both doctors were concerned and ordered every blood test possible to be sure my heart and body could withstand such an intense operation.  Probably what impressed me the most about Dr. Costa was the manner in which he interviewed me after having read my case file.  I mean after really reading it and remembering what seemed like minute details.  He knew me.  He planned for operative and postoperative conditions in a manner that no other surgeon had ever done.  He instructed us to have him paged if we had any, and I mean any, concerns postop.  And he responded.  When he would come in during rounds, I was in awe of the way this man's brain functioned.   His wheels are always turning.  Now I consider myself an intelligent woman, but wow! Dr. Costa has more knowledge in his baby finger than most of us have in our entire brains!  It was a beautiful thing to experience.  And most of all ---  I knew he cared.  He made eye contact with me.  He smiled at me.  We even joked and bantered.  I like to think I was his favorite.....though something tells me he is one of those people that has the uncanny ability to make you feel like you're the only one who matters when he's with you. ;-)  

I owe a lot to these two incredible surgeons.  And I have been sure to tell them how grateful I am for all they've done for me.  In fact, I owe a lot to both the previous surgeons who worked on me as well!  Particularly, if it weren't for the aforementioned brilliant highly revered general surgeon (who has actually moved into a more specialized area of surgery out of state) who literally held my hand as we started this horrific journey together when I was 28 and saved my life - the first time - none of this would have ever been possible.  So to him, my Maverick, my original medical knight in shining armor - he knows who he is if he's reading this, a consummate professional and private man so I will not name him here - I say THANK YOU!  He said some wise things to me all those years ago about surgery and medicine that have stuck with me; he saw ME, not just a medical condition; and he treated ME all the while saving my life - TWICE! - among countless other moments of counsel and guidance.   Due to my elusive intestinal malrotation, in the span of thirteen months this man had my insides in his hands THREE times!  The first time was two weeks after my husband and I got engaged; the next was four months prior to our wedding; and the final surgery with him was three months after our honeymoon.  What a crazy time!  Talk about in sickness and in health!  All the while he was saving me, we talked about life.  I shared details of our wedding planning; he told me about his sister who was, if I recall correctly, either on an olympic track for gymnastics or close to that.  My point in sharing this is that we got to know each other.  This brilliant man who was in high demand every second of every day took the time to make me feel like I mattered to him - not that just solving my case mattered.  That means something to a patient with chronic, serious issues.  Hell! It means something to any patient!

I forgot until now that all those years ago he had a psychiatrist come and interview me while he watched on with his surgical residents at the time.  I recall that he did this not because he thought I needed counseling to help me manage my condition and circumstances, rather because he was impressed with my resilience and tenacity in spite of them.  I remember that he wanted his residents to SEE THE PERSON behind the medicine and apparently was somehow drawn to me for that.  I guess I have just gained a valuable insight about myself - I have always been tenacious and resilient; this malrotation journey didn't illuminate that trait.  It was there all along.  The lesson here is that with every challenge we encounter in life we develop skills on which we can draw for assistance with future challenges.  Our task is to acknowledge those skills, tap into that inner resource we have - to save ourselves! 

But, today, I take a minute to thank myself.  People have said how brave I was or acknowledged how scary or hard it must've been for me.  They're right.  But truly, you have no idea just how scary and hard it really all was.     

So today, six months postop, I thank the part of me that is a fighter; the part of me that is tenacious and refuses to accept limitations; the part of me that had the strength to decide that something was more important to me than the fear.  I don't wish this condition on anyone, it's horrific; but I also don't resent that I went through it.  I learned a lot about myself over this journey.  I discovered strength of a magnitude I didn't realize I possessed.  I've developed coping skills I've only taught to others in my work as a school social worker.  I've cultivated a strong sense of resilience.  And what is likely the most important blessing from this entire journey is that through it all I've shown my children that we do not need to shrink from adversity.  I have shown them that we always have power even when things seem bleak; we have the power to choose our mental attitude, to gain knowledge, to advocate for ourselves.  I have shown them that even on our worst days there is always ALWAYS something to be grateful for.  

and today...I am happy to say that this version of me is very proud I was strong enough... this version of me is very proud that I decided to leap...this version of me decided it was my time to fly... 

Thanks for reading! xo